Living with FAP: Still in Baltimore

Tuesday, December 11, 2007

Still in Baltimore

Hello, All...

I had my appointment at 7:15 this morning (UGH! including taking 2 kids w/ us). Dr Cameron was concerned about some pain that I'm still experiencing...pain meds isn't even touching it (I was up all night...literally). It's hard to describe, but it's like I'm painfully aware of the upper portion of my small intestines from left to right...it HURTS!!! So, he sent me for labwork & a CAT scan.

The probelm is that insurance requires preauthorization. My case manager was working with the hospital to jump through all the loopholes; however, I was tired, impatient, in PAIN & waiting with 2 very tired & bored kids (they actually did a GREAT job, but they're 6 & 8 & act like it at times!). I called & talked to one of the pastors at our church (Lars) who promised to pray for the situation. In the meantime, I was thinking it might not happen until the afternoon & I really, really needed to lay down so we left. As we were driving down the parking garage, the phone rang & the hospital said the referal was in place...sooooo, we parked (again) & came back. We waited FOREVER, & my pain was increasing. I finally had Matt take the kids for a walk. In the meantime, my name got called for processing. The guy was way to pokey, & I'd been on my feet way too long (no vertical time since 5am, & it was around noon). I felt as if I was fading fast so I asked for a wheelchair (can you believe that I actually did that???) & was told I could go get one downstairs. I politely told the guy that I wasn't even 2 weeks post-op from MAJOR surgery with an incision that was at least 1 foot long & there was no way I was going to walk downstairs to the entrance for a wheelchair. In the meantime, Matt & the kids returned & got me one just (in time).

When the x-ray tech got my paperwork, she noticed that I'd documented that I was allergic to CT scan IVP contrast & that I hadn't done my allergy prep-work. (How could I? I didn't know about it yesterday?) When I had a CT scan at Potomac Hospital's ER, they put something in my IV right before injecting the dye...well, this radiology dept doesn't do that. I literally sat there & cried in front of them. I was tired, in pain, had waited around longer than I had to, & had NOTHING to show for it. They gave me a script for the steriods I need to take so we can return tomorrow around 1pm (24hrs after I took the 1st dose).

Part of Dr Cameron thinks that it's nothing; however, he's not blowing it off so that means it might be something.

Please pray for the pain to be under control, for an accurate diagnosis & treatment, for me to get A LOT of sleep tonight, & finally & most importantly for me to keep my focus where it belongs...on Christ & not on my temporal circumstances. Pray also for me to have patience & grace with my family regardless of how I'm feeling.

Thank you in advance for your prayers. Please do not worry or feel guilty for not responding. I know you love me & care for me & will pray for me. I truly appreciate it.

Love in Christ,
Stephanie<><

No comments:

Post a Comment

Eating with a J-pouch

OK, I am not a trained expert in the area of diet & nutrition; however, I do know what I have learned from experience. Most of your dietary adjustments will come from trial & error. When you eat something, pay attention to whether or not you have bathroom issues after eating it. If the item causes any problems, then avoid it next time, eat it in moderation, or just know that when you eat it, you can expect to spend a lot of time in the bathroom. Sometimes, it just depends on how much you want to eat something that will determine if it's worth the price you'll pay later.

Also, remember that everyone is different. Just because something works for me doesn't mean that it will work for you. I know people who say anyone with a j-pouch should stay away from nuts; however, I can eat them & have no problem.

Foods That May Cause Problems with a J-pouch

Chopped (frozen) spinach: It causes the same problems as shredded lettuce. It's weird because fresh raw spinach works like a charm.
Crushed pineapple: I don't know what it is, but I have to make sure I eat this in moderation.
Items high in fat like whole milk & Oreo cookies go through you very quickly & you'll be spending some extended time in the bathroom.
Lettuce, especially if it's shredded, causes lots of problems...maybe it's too much roughage. Raw fresh spinach is the perfect substitute because it causes a lot less problems & is healthier to eat!
Watermelon: It's just too fiberous & bulky. It's a shame too, because I really like watermelon & so do my children, but I don't get it very often because I just can't eat it (not even in moderation), & it's just too tempting when it's in the house.

Healing a Sore Bum

Colon surgery brings many changes…especially in the areas of diet and BMs. Depending on what you eat and how your adjusted plumbing reacts to various foods, you may be spending a lot of time in the bathroom which leads to a very sore bottom. This is due to frequency of going as well as to not having the colon available to absorb the digestive juices. Instead, the digestive juices (along with the rest of our output) come in direct contact with the skin on your bottom…skin that was not designed to handle the acid. In time, things will adjust and get better. Your body will handle foods better. You’ll learn which foods cause problems so you can avoid them. Your pouch will expand which will require fewer trips to the bathroom. Your small intestines will start to absorb some of the digestive juices. The skin around your bottom will also toughen up a little. Bottom line is that what you’re going through right now will not last forever. Don’t get me wrong…things will never be “normal” again, but they also won’t stay this “bad” forever.

If you're having an especially bad day (or days) & find yourself spending a lot of time in the bathroom, here are some tips to help with a sore bottom:

Peri-anal bottle: This is a squirt bottle usually given to women after having an episiotomy, but it’s also used for other things. If you had an ileostomy, you should have received one to empty out your bag. This is an important item to have readily available in the bathroom. Fill it with very, very warm water…as hot as you can handle on your skin. As you potty, use it to squirt the water onto your bottom in order to get the digestive acid off your bottom as soon as possible…BEFORE the “rage” begins.

Balneol: This is an over-the-counter peri-anal cleansing lotion that neutralizes the acid on your bottom. Even if you are using the peri-anal bottle to squirt as you go, some acid will remain on your skin, but Balneol neutralizes it. You can get Balneol from most drug stores (like Walgreens & CVS), but sometimes, you may have to ask for it at the pharmacy counter. Some places, like CVS, even have their own version of it for $1 cheaper than the name brand. Either one will do the trick. You can apply a drop or 2 to your TP after you are finished pottying and wipe it on your bottom to neutralize any acid that’s leftover from the peri-bottle. For more information, check it out at www.balneol.com.

Calmoseptine: You should also have a GOOD barrier cream. Calmoseptine works way better than using Desitin or even Boudreaux's Butt Paste (which is an amazing diaper rash ointment). It is camphor-based cream that works as both a healing agent as well as a barrier on your skin. It can be purchased in both a tube and a tub (I prefer the tub) and is available over-the-counter, but you may have to ask for it. I must admit that it’s a little on the expensive side but so well worth the price! You can learn more about it at www.calmoseptineointment.com.

Soft TP: I think this is pretty self-explanatory...your bottom will thank you for it.

Other helpful tips: In the beginning, you may want to air dry your bottom after using the bathroom…it will get very sore from chronic use. Another thing that helps is to soak in a tub of warm-hot water…as hot as you are able to sit in. When you’re done, you can also use a hair dryer on the cool setting to dry your skin. Once it’s dry, be sure to apply Calmoseptine to the skin.